It often seems to me that the one day of medical school no doctor skips is the one where they learn that every single medical problem an obese person has is due to their weight. They seem to hand out passes to skip looking any more deeply into any issue presented by someone that is overweight. While I don’t dispute that my obesity is dangerous to my health and, without a doubt, affects every part of my body, this weight-based bias forced me to live with undiagnosed Psoriatic Arthritis for more than two years.
After a long drive, I developed pain in my right knee. Random pains that hung around for a couple of days were nothing new to me, and so I took ibuprofen, iced it, and assumed it would go away. It didn’t. Not in a week, and not in two weeks. By the third week, my knee was so painful I could hardly walk. It hurt to do anything, even roll over in bed at night. I finally made an appointment with an orthopedist.
At that first appointment, the orthopedist was shocked by the amount of swelling and fluid in my knee. He decided to draw off some of the fluids to be able to see the joint better. Once that was done, he inspected, bent and unbent my knee. I was informed there was a lot of “crunching” in the joint, which wasn’t a revelation to me. I described it as broken glass in my kneecap.
Once he had inspected my knee carefully, he delivered his diagnosis: Osteoarthritis. I was surprised, as I was scarcely in my mid-30s at the time. He acknowledged I was younger than was typical, then added that the “extra weight on [my] joints had likely caused them to degrade too soon.” It still didn’t seem like the right diagnosis, as no one in my family had osteoarthritis, especially at a young age. But, he was the doctor, and maybe my weight really was the problem.
It wasn’t until the “osteoarthritis” began in my hands and wrists that I started to question the diagnosis. As I wasn’t in the habit of doing handstands, or even pushups, I didn’t see how my weight could be causing my hand and wrist joints to degrade. Over the course of a couple of years, my knees, wrists and hands got progressively worse. On the worst days, I could hardly walk or brush my teeth. I was wearing braces on both knees and wrists. Several fingers no longer straightened out and some of them were so swollen I couldn’t get rings that had previously been loose past the first joint.
At the same time, I was dealing with what was diagnosed as psoriasis on my scalp. Since childhood, I’d had what I believed was a bad case of dandruff. I had been able to manage it with very strong dandruff shampoos until a couple of years before the pain in my knees began. The strongest over the counter dandruff shampoos had no effect on it, and at its worst, my scalp was so flaky that I could simply touch it with a finger and a cascade of flakes would rain down like snow.
The embarrassment from the extreme flakiness eventually pushed me to see a dermatologist. When I saw her, I went in wearing knee and wrist braces and walking with a cane. She diagnosed psoriasis and prescribed expensive shampoo and oil that had very little effect on the situation. It was on my follow-up visit, to let her know that what she had given me hadn’t worked, that I saw a pamphlet that said “Psoriatic Arthritis” on the cover. I saw it from a distance enough that I couldn’t reach it without getting up, and I judged it not worth aggravating the pain in my knees. The words on the cover stuck in my mind, though, and I couldn’t help thinking “What if the answer has been right there, covering my shoulders in flakes all along?”
I normally stay away from asking Doctor Google’s opinion on my medical conditions. Everything from a paper cut to a bee sting could lead to five fatal diseases, all of which I was sure I had. But since no doctor had ever said the words “psoriatic arthritis” to me, there was no other way to find out. When I Googled it, I heard the proverbial angels sing. It was utterly obvious to me that I had found the explanation for my joint problems.
Googling also told me that I needed to see a rheumatologist for treatment, and I knew I would need a referral. I made an appointment with my family doctor and suggested the idea. She merely shrugged, acknowledged it was a possibility, but felt compelled to add that she saw why the orthopedist I had seen assumed my pain was related to my weight. She put in the referral, and the following day I was scheduled for an appointment six weeks away.
The day of the rheumatology appointment, I was so hopeful that she could help that I’d been too excited to sleep. Within 90 seconds of entering the room, she said she believed I had been correct in my armchair diagnosis. It was psoriatic arthritis, and the only thing she seemed unsure of was why neither the orthopedist nor dermatologist had made the connection.
Once I had the confirmation that I had been dealing with psoriatic arthritis for those long years, I was a mix of hopeful that the correct treatment would improve things and angry that my symptoms had been dismissed out of hand because of my size. Because untreated Psoriatic Arthritis is degenerative, my joints had been facing irreversible damage for years at that point. If the orthopedist hadn’t let his fat bias blind him to the fact that it was uncommon for a 35 year old, even a fat one, to develop such rapidly progressing osteoarthritis, I could have been saved not only the pain, but also the damage.
I was prescribed methotrexate and told to come back in four weeks. By then, I no longer needed the braces on my knees or wrists. I still had pain, stiffness, and swelling, but my joints were functional again. My scalp had also cleared up entirely. For the first time in my life, I didn’t even need a dandruff shampoo. I felt as though I had been given my life back.
It was 13 months ago that I began treatment, and while I am not completely pain-free, the decrease in my pain levels was unimaginable then. Having my scalp clear has done wonders for my self-esteem as well. Instead of being the person wearing braces on multiple joints, walking with a cane and covered in a layer of dandruff, I am able to move relatively pain free and wear black shirts with no hint of the former state of my scalp.
My experience with the delay in diagnosis is far from my first time having all my issues blamed on my weight. And though I have lost 50 pounds from simply being able to walk and move, I know it will not be the last time I am told that losing weight will fix all my problems. This experience was a great learning opportunity, though. I learned that doctors don’t always have the answers, and they can’t, or perhaps don’t try, to see past my weight in many cases. Thus when something about an explanation or diagnosis seems wrong or inadequate, I have to be my own best advocate and seek out second opinions and do my own research. Had I not done so in this case, I believe I would no longer be able to walk or hold a pencil. I am living proof that advocating for yourself can, in some cases, give you back the ability to live a life you thought was lost to you forever.